What it's like to have the deadliest form of skin cancer

May is Skin Cancer Awareness Month. With over five million new cases diagnosed per year, skin cancer is the most common form of cancer in the United States.

It was just a small mole on her neck — a dark spot parked right under her jawline, taking up residence in the nook where Tracy Callahan’s two children would nuzzle. But her husband was worried about it.

So Callahan, a nurse who lives in North Carolina, grudgingly called her dermatologist to get it looked at and had to wait four months for the next available appointment.

“I was about to cancel it because I was busy,” she tells Yahoo Lifestyle about her experience five years ago. “My kids had a lot going on; it was the start of school. My husband said this is one I just don’t think you should put off. I’m very moley — I’ve had plenty of things cut off. I remember thinking what a bloody waste of my time.”

At the appointment, the physician’s assistant kept taking pictures of the mole. “She said someone will call me later,” Callahan recalls. “I thought, ‘Why?’ An hour later the phone rang. My doctor called and said, ‘I need to see you, and we need to remove that mole. I need you to come in after hours.”

Callahan still wasn’t worried. “Who at 38 thinks they have the deadliest form of skin cancer?”

After the mole was removed, Callahan was left with 15 jagged stitches along her neck. “I knew at that point there was a problem.”

For Tracy Callahan, the blistering sunburns of her childhood summers spent in Florida, followed by using tanning beds “religiously” in the ’90s, had caught up with her.

Her dermatologist called her with the results: “She said, ‘I have really good news,’ and her next words were, ‘You have melanoma.’ I thought how the heck is that good news? But it started me off in the right place. ‘We caught it much earlier than I thought,’ my doctor said.”

Tracy Callahan’s first melanoma came from a mole on her neck, just below her jawline. (Photo: Tracy Callahan)

In fact, the five-year relative survival rate after diagnosis of localized, early melanoma is over 98 percent, according to the Melanoma Research Alliance.

From then on, Callahan was seeing her dermatologist for skin checks every three months. But her encounter with melanoma was far from over. In fact, it just getting started. Over the next five years, Callahan, who is now 43 and has 10- and 12-year-old boys, would face melanoma multiple times.

After her original dermatologist left to work at elsewhere, Callahan found a new doctor. During that first visit, the dermatologist found a spot on Callahan’s right ankle. She was told the same refrain, that it was good news — it was melanoma, but it was caught early. The 3-millimeter spot on her ankle left her with 64 stitches because her doctor had to do a skin flap and reconstruction of the tissue on her ankle after the cancerous tissue was removed. “You don’t think of the magnitude of what skin cancer is,” she says.

Tracy Callahan’s next bout of melanoma was found on her ankle and required multiple stitches. (Photo: Tracy Callahan)

Three months after that, her dermatologist found melanoma on her right arm.

It was after that third diagnosis that Callahan started a blog to share her experiences, followed by founding the Polka Dot Mama Melanoma Foundation in September 2015 to raise awareness and promote melanoma education. “The name came from my younger son who was in first grade then,” she explains. “He wrote for a school project, ‘My mom is special because she’s polka dotted with moles.’ It made me realize it’s what makes me special. Though special is a loose term!”

Another melanoma diagnosis, in November 2017, followed — this one was one of the hardest for Callahan to cope with. “[My dermatologist] looked at me and said, ‘What is that on your face?’” Callahan recalls. “I said, ‘Please do not tell me. Anywhere, but not my face.’ Sure enough, it was melanoma.”

The mom of two had Mohs surgery, a procedure in which tissue is removed in stages until no cancer cells remain in the area, according to the Skin Cancer Foundation. “I had a hole the size of a Ping-Pong ball on my face before they repaired it,” she says. “It was probably, emotionally, the hardest to recover from.”

Tracy Callahan recently had melanoma removed from her face, leaving her with a large incision. (Photo: Tracy Callahan)

Her 12-year-old son, after hearing his mom’s educational talks about end-stage melanoma, broke down crying after this latest surgery. “He said, ‘Mom, how do I know you’re not stage 4? How do I know you’re not going to die?’ He wanted to know if it was really OK. I was.”

She adds: “I’m kind of like a cat. I have a lot of lives.”

Needless to say, Callahan is vigilant about sun safety for herself and her kids. Sunscreen is a daily part of her routine. “I tell people, ‘You brush your teeth in the morning. You put your SPF on your face, neck, and hands before you go out,’” she says. “It’s not just the days you’re going to the beach. It’s the days you don’t think about. Sun exposure is accumulative. It’s the 10 minutes you’re going to Target. One day it’s 10 minutes unprotected. And the next day it’s another 10 minutes — that’s 20 minutes.”

She also points out that it’s not enough to put on sunscreen in the morning and then expect it to last all day. “It’s not a suit of armor,” Callahan says. “The key is reapplication. You have got to put it on again.”

Callahan also refers to sunscreen as “the last defense between you and sun” — meaning, there are other important ways to protect your skin on a daily basis. So she is never caught off-guard, Callahan always keeps an extra-wide-brim hat in her car and wears sunglasses. She is also a fan of sun-protective clothing — in particular, she keeps a poncho from SPF Addict, a UPF clothing company, handy so she can throw it on to protect her from the sun.

Tracy Callahan with her husband and their two boys. (Photo: Tracy Callahan)

And her children know the drill. Unlike many kids who protest and wiggle away when you try to slather on sunscreen, in Callahan’s household, “they don’t argue because they know,” she says. “It’s nonnegotiable. You don’t negotiate about seatbelts in the car or bike helmets.”

Callahan also openly shares her story with others to motivate them to protect their skin and think about how they can live “sun smart.” “I just don’t want anybody else to have to go through this,” she says. “I’m alive and lucky, but it’s a pain in the you-know-what. I hope people can relate to this and say, Gosh, I should get my skin checked. It could save someone’s life.”

She adds: “Every day I look in the mirror and this big, giant scar stares back at me. It didn’t initially, but now it reminds me of how lucky I am.”